Journal entry by Jennifer Long —
Hi, everyone!
Amelia has been a little trooper throughout this entire trip. After a few days of being on a feed for 1.75 hours, off for 1.25 hours, we were able to switch to 1.5 hours on, 1.5 hours off, with one extra-long break before bed (two hours). Her blood sugars remained stable, and the doctors decided not to push her stomach to stretch any more at this time. Apparently, stretching it too quickly can cause problems that essentially reverse all the work we've done to get her to tolerate higher amounts of formula, and we definitely don't want that! She is still on an overnight feed (10 hours), but this new schedule gives us EIGHT HOURS of not being attached to a pump each day. That's a huge difference from before coming to CHOP, where she was only off two hours per day.
Once Amelia proved that she could do well with this schedule, she was discharged. We are now back at the Ronald McDonald House and plan to return in a week. She has several appointments late next week at CHOP to generally give her a really detailed workup, checking her heart and other organs, etc. We will also meet with the GI team to address her reflux.
Unless the GI tells us otherwise, when Amelia turns one year adjusted (age based on her due date of February 11), we plan to start slowly transitioning Amelia to a new type of food, essentially a blended version of table food that a typical toddler would eat. Most tubie kids do much better on these types of diets, both with blood sugar stability and less GI upset. Fingers crossed for both! We asked about switching early during this trip, but the doctors believe she needs that final month of pure formula to let her digestive tract mature a little bit more. Once she switches to this blended food and is stable on it, we will likely try to consolidate her feeds even more. Eventually, we will also try to eliminate the overnight feed, but that may take a while. Most of these transitions should be okay for us to do at home with frequent blood sugar checks, but we may come back to CHOP when we eliminate the overnight feed as they recommend a safety fast - basically checking how long she can go without being fed and still have stable blood sugars. However, that may not be for quite a while (probably more than a year), and it's possible that Duke could perform this test. We have plenty of time to figure that out.
Thanks as always for all the love and support!
Amelia has been a little trooper throughout this entire trip. After a few days of being on a feed for 1.75 hours, off for 1.25 hours, we were able to switch to 1.5 hours on, 1.5 hours off, with one extra-long break before bed (two hours). Her blood sugars remained stable, and the doctors decided not to push her stomach to stretch any more at this time. Apparently, stretching it too quickly can cause problems that essentially reverse all the work we've done to get her to tolerate higher amounts of formula, and we definitely don't want that! She is still on an overnight feed (10 hours), but this new schedule gives us EIGHT HOURS of not being attached to a pump each day. That's a huge difference from before coming to CHOP, where she was only off two hours per day.
Once Amelia proved that she could do well with this schedule, she was discharged. We are now back at the Ronald McDonald House and plan to return in a week. She has several appointments late next week at CHOP to generally give her a really detailed workup, checking her heart and other organs, etc. We will also meet with the GI team to address her reflux.
Unless the GI tells us otherwise, when Amelia turns one year adjusted (age based on her due date of February 11), we plan to start slowly transitioning Amelia to a new type of food, essentially a blended version of table food that a typical toddler would eat. Most tubie kids do much better on these types of diets, both with blood sugar stability and less GI upset. Fingers crossed for both! We asked about switching early during this trip, but the doctors believe she needs that final month of pure formula to let her digestive tract mature a little bit more. Once she switches to this blended food and is stable on it, we will likely try to consolidate her feeds even more. Eventually, we will also try to eliminate the overnight feed, but that may take a while. Most of these transitions should be okay for us to do at home with frequent blood sugar checks, but we may come back to CHOP when we eliminate the overnight feed as they recommend a safety fast - basically checking how long she can go without being fed and still have stable blood sugars. However, that may not be for quite a while (probably more than a year), and it's possible that Duke could perform this test. We have plenty of time to figure that out.
Thanks as always for all the love and support!
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